October is National Disability Employment Month

Nicole Jorwic, J.D. – Director of Rights Policy for The Arc

October is National Disability Employment Awareness Month, a time to reflect on the advancements in making employment for individuals with disabilities a reality, and also, on how much work is left to be done. As the Employment First movement has been sweeping across the country, it is important to remember why a job is so important to an individual with a disability. My brother is 26 and has autism, I asked him why getting a job is important to him, this was his response:

“I think that a job is essential to a person with a disability because it gives us purpose, and common ground to build on with the rest of the world. All my siblings get so much of their identities from their jobs, I should have the same chance. All my brothers and sisters in disability deserve the opportunities to work in our communities, for fair pay, so that we can fulfill our destinies.”

As we work in Washington DC and on the state-level to ensure that policies and practices converge to make the road to employment smoother for individuals with disabilities, we must remember that a job is an essential part of what gives someone standing in their community. Individuals with disabilities are succeeding in meaningful careers in a wide range of private businesses, government agencies and nonprofit organizations, while others are becoming entrepreneurs with their own micro-businesses.

We moved from a time when the thought of individuals with disabilities having a job was a dream, through a time when the only options were sheltered workshops, into a new era where there is meaningful and competitive work for individuals with disabilities. The value in having a response to “what do you do?” is immeasurable for individuals with disabilities across the country, including my brother Chris.

Celebrating Catalysts for Employment

The Arc’s Catalyst Awards were created to recognize individuals, businesses, and other organizations that are catalysts for achievement in the lives of people with intellectual and developmental disabilities (I/DD). In honor of National Disability Employment Awareness Month (NDEAM) we would like to highlight three of our 2015 Catalyst Award winners that have distinguished themselves as champions in creating employment opportunities for individuals with disabilities.

Acadia Windows and Doors, winner of Small Business Employer of the Year Award, is located in Aberdeen, MD. The business partners with The Arc Northern Chesapeake Region to not only employ individuals with I/DD, but to educate other local employers about the importance of including people with disabilities in the workforce. Changes that have been made at the plant to accommodate employees with I/DD have actually created a safer work environment for all employees, leading Acadia Windows and Doors to win the Safety and Health Achievement Recognition award from Occupational Health and Safety Administration.


was awarded National Employer of the Year for the work done through its Autism at Work Initiative. The initiative, headed by Jose Velasco, was started in 2013 and has set a goal of having 1 percent of the company’s total workforce be people on the autism spectrum by 2020. Through a partnership with the Danish nonprofit Specialisterne and The Arc@Work, SAP has successfully hired 12 individuals on the spectrum at pilot sites in Palo Alto, CA and Philadelphia, PA. SAP is currently in the process of hiring up to 17 more individuals with I/DD at the Philadelphia site this fall.

Tom Wheeler, winner of the Federal Government Advocate of the Year, is the Chairman of the Federal Communications Commission in Washington, DC and created the Disability Advisory Committee of the FCC. Thanks to Tom’s outstanding work 7 individuals with I/DD have been hired at the FCC and are receiving competitive salaries and benefits; and these 7 are just the beginning. As the FCC continues to hire and support individuals with I/DD it will serve as an example to the federal government as whole.


These three trailblazers have set outstanding examples of acceptance and inclusion for individuals with disabilities in the workplace. Their commitment to an inclusive work culture has created valuable opportunities for their employees with I/DD and allows individuals with I/DD to live more independently and as active members of their communities.

We have a long way to go in realizing the goal of higher rates of employment for people with I/DD – today, 85% of people with I/DD are unemployed. Are you feeling inspired to become a catalyst for change, and willing to work with us to unlock the talent of people with I/DD to better their lives and improve your workplace? To learn more about the employment related services available to chapters and businesses through The Arc@Work, please visit our website.

A Weekend of Inspiration and Celebration

QSOnelvV9AyzjpQBSydgujLAJVSU7qtf0Wte27bv0jA,oetQPhLxNtIrNNAyiJ9vMNATotRT2lUcEZDusDY36jkThe Arc spent the first weekend of October in Indianapolis, IN with nearly 800 attendees, listening to inspiring speakers and learning how to better serve the I/DD community. Keynote speakers included Tim Shriver, Chairman of the Special Olympics, Derrick Feldmann, creator of the Millennial Impact Report, and Emily Travis of NOFAS. Fifty-one breakout sessions, a Self-Advocacy Symposium, NCE Pre-Convention, and our inaugural Catalyst Awards provided ideas and inspiration to carry The Arc’s movement into the next 65 years and build a stronger and more inclusive future. If you couldn’t attend—you missed out!—but can access most of the presenter’s slides from sessions on the Convention website.

If you couldn’t make it this year or are already looking forward to the next one, mark your calendar for October 27-29, 2016 for the National Convention and International Forum we will be holding jointly with Inclusion International in Orlando FL. We wanted to give you a sneak-peek of some of the photos we captured throughout the weekend. Stay tuned for more, and thanks to every attendee for making the weekend so special.

Insuring the Future of The Arc

Have you ever considered the possibility of making a more significant donation to The Arc?  For many families and supporters this probably sounds impossible, but it may be easier than you think.

When we were young and concerned about an uncertain future, many of us bought life insurance as a hedge against a situation that could devastate our young family.  Life insurance was a tool that provided financial security for our loved ones’ future.

As time passed and we built a ‘nest egg’, we find that the importance of that life insurance shrinks.  The kids grow up and become independent, we build a retirement plan and some of us may have invested in real estate and/or financial investments that provide security for our remaining years.  Even if we have a family member with a disability, many of us created a special needs trust to ensure they are cared for without it affecting other financial needs that our families have.  Therefore, the life insurance policies that were paid for over many years can now serve as a great way to give a gift of value that may not be needed by your family.

Please take a few moments to think about whether you too might be able to make a gift of a life insurance policy to The Arc.  It’s an easy gift to make; it simply requires adding a beneficiary or changing the ownership on an existing policy.  If the policy is already paid up, there would be no additional cost for making a very special gift that will benefit future generations of people with disabilities and their families who will continue to be served by The Arc.  To discuss a gift of life insurance or another special gift, please contact Bob Bennett, Director of Major Gifts & Planned Giving at (202) 600-3495 or by email: bennett@thearc.org.


The Arc Reacts to Announcement of No Social Security Increase for 2016

Yesterday, the Social Security Administration announced that inflation as calculated under the Social Security Act did not increase last year, and that as a result, monthly Social Security and Supplemental Security Income benefits will not increase in 2016.

“Nearly 65 million Americans, including over 14 million people with disabilities and their families, will see no cost-of-living adjustment in their Social Security and Supplemental Security Income benefits in 2016,” said Marty Ford, Senior Executive Officer, Public Policy.

“While the official measure of inflation did not change in 2015, at The Arc we know that many beneficiaries, including people with intellectual and developmental disabilities, are struggling to make ends meet. Their Social Security and Supplemental Security Income benefits won’t increase in 2016, but their rent, out-of-pocket medical expenses, and other daily living costs may.

“What’s hard to imagine is that some in Congress think that no cost-of-living adjustment is too much, and want to cut our Social Security lifeline. Shockingly, there’s still talk in Congress of adopting an even lower inflation formula in the Social Security Act, so there would be smaller, and fewer, annual benefit increases. And some in Congress are holding hostage 11 million Social Security Disability Insurance beneficiaries who will face a 20 percent benefit cut at the end of 2016 if Congress fails to act. The Arc calls on Congress to strengthen our Social Security and Supplemental Security Income systems, and to reject any cuts to this lifeline for people with intellectual and developmental disabilities,” said Ford. 

The Arc Wants to Hear about Your Experience Applying for Jobs Online

If you are an individual with intellectual and/or developmental disabilities (I/DD) (or someone who provides assistance to an individual with I/DD), The Arc wants to hear about your experience applying for jobs online!

Over 85% of individuals with I/DD are unemployed and rely solely on family and/or government supports to get by.  The lack of employment options for people with I/DD reduces opportunities for them to interact with their peers in an integrated setting and reinforces the harmful stereotype that people with I/DD are not productive members of their communities.  The Arc works in a myriad of ways to improve the employment outcomes for individuals with I/DD to ensure they are able to lead independent, meaningful lives in the community in competitively paid jobs.

As businesses increasingly shift to online platforms, a major concern within the disability community over the last decade has been the accessibility of websites for individuals with disabilities.  In an age where more than half of new hires are sourced from the web, it is vital to ensure that individuals with I/DD are able to utilize all of the available tools to gain meaningful community-based employment and stay out of poverty.  Great strides have been made in recent years towards improving the accessibility of various websites for individuals with visual and hearing disabilities through methods such as closed-captioning and compatibility with screen-reading software.  In allowing individuals to fully experience the web, such tools are as fundamental as ramps for wheelchair users.

Unfortunately, very little progress has been made on this front for those with I/DD.  The Arc seeks to ensure that individuals with I/DD do not get left behind and become a web underclass.  Like everyone else, individuals with I/DD desire to learn, socialize, and shop online as well as access job opportunities in this forum. Towards this goal, The Arc wants to find out about YOUR experience with applying for jobs online to assess how accessible (or inaccessible) these mechanisms are for you.  We have developed two surveys – one intended for individuals with I/DD and the other for those who assist individuals with I/DD such as job coaches or family members – to find out more about your experiences applying for jobs online.

Our community’s ability to access these applications is vital to The Arc’s continued efforts to expand integrated, competitive, and community-based employment opportunities for individuals with I/DD and ensure that the integration mandates of state and federal disability rights laws are meaningfully fulfilled.

Do You Know the Health Conditions Commonly Associated with Down Syndrome?

peopleOne in about every 700 babies is born with Down syndrome. Most people with Down syndrome are able to live a full and healthy life, with many individuals living well into their 50’s and some even their 60’s. Our knowledge of health conditions that are commonly associated with Down syndrome has increased drastically over the years, providing these individuals that are living longer with improved health care and more comfort. Not all individuals with Down syndrome will have or develop these conditions, and many can live their entire life without any. However, being aware of these conditions and getting yearly preventative check-ups will help to improve quality of live and prevent smaller issues from developing into larger and more complicated ones.

A few of the health issues that are frequently seen in individuals with Down syndrome include:

  1. Heart Defects – Congenital heart disease is found in about half of babies born with Down syndrome. Ensuring that proper steps are taken when they are an infant—such as getting an echocardiogram and follow-up evaluations—will help to determine if a defect is present and what steps will need to be taken for treatment. Yearly check-ups are recommended to make sure no further problems exist.
  2. Thyroid Disorders – Symptoms of thyroid disorders in infants are very similar to those symptoms commonly associated with Down syndrome, so these cues can easily be overlooked. Babies born with Down syndrome are recommended to have their thyroid checked at birth, 6 months, 1 year of age, and annually every year after. Hypothyroidism, the most common disorder found, can develop at any age and can lead to weight gain, fatigue, and constipation. Effective treatment can easily be prescribed though once diagnosed.
  3. Hearing Issues – About 70% of individuals with Down syndrome will experience some hearing loss. Early detection of hearing loss is essential, as children mainly learn to speak from hearing words and sounds around them. Poor hearing could affect speech development, learning, and social skills or cues. Excessive ear wax build-up is common in adults and could be confused with behavior issues such as stubbornness or confusion.
  4. Vision Impairments – Poor vision can have an effect on an individual’s balance and increase the risk of falling. Luckily though, most eye issues are able to be fixed with corrective lenses. Other common eye problems that can occur include cataracts (clouding of the eyes), strabismus, crossed eyes, and rapid involuntary eye movements. Eye exams are recommended to start annually when individuals are infants.
  5. Infections – Individuals with Down syndrome have a much higher risk of developing an infection, especially respiratory infections. Defects in the immune system make it harder to fight off bacteria and viruses. Any infection should be treated immediately and monitored thereafter to ensure it does not get any worse. Obtaining all recommended immunizations will help to prevent and reduce infections.

Even though not all individuals with Down syndrome will encounter all of these issues, it’s good to be mindful of them and take precautions to get yearly check-ups to help prevent any future health concerns. Learn more about how to stay healthy and active through The Arc’s HealthMeet project.

Is Justice Delayed Really Justice?

By Leigh Ann Davis – Program Manager, Justice Initiatives


Bob Perske, Martha Perske and Richard Lapointe at the Perske’s home days after Richard’s release on bond in April.

If you had been in prison since 1987 for a crime you didn’t do – missing nearly three decades of your life – and then were released and had charges dismissed, would you believe you had received justice? I would not.

While attending The Arc’s national convention in Indianapolis this month, I received news that so many of us had been waiting for: charges against Richard Lapointe, a man with intellectual disability who had been in prison since 1987 until April of this year for a rape and murder he did not commit, were dismissed and he was finally a free man! After a lengthy, coercive interview with police, Lapointe falsely confessed to the crime, which was committed against his then-wife’s grandmother. Since then, his legal team and advocates (including advocates within The Arc at the local, state and national levels) have been fighting for his case to be reconsidered because of his intellectual disability.

In the spring, the Connecticut state Supreme Court raised concerns about the circumstances of the interrogation and the truthfulness of the alleged confessions, and ordered that he be released or given a new trial. Then prosecutors agreed not to pursue the means to keep him in prison while they decided whether to challenge the state Supreme Court decision. Richard lived in an unbearable stage of limbo – until last Friday, when charges were formally dropped.

“Freedom is when I can walk down the street and wave to somebody and not worry that, that they’re gonna think I’m trying to be trouble,” Lapointe said in the Hartford Courant, June 15, 2015

The decades of advocacy it took to right this monumental wrong was thanks to dedicated advocates who never gave up hope that Richard would one day be a free man. Robert Perske founded The Friends of Richard Lapointe more than 20 years ago when, during Lapointe’s first week in court, he noticed that not one person was sitting on Richard’s side of the courtroom – except Perske. By the next Monday morning, some 30 people sat behind Richard in court thanks to Perske’s quick and persuasive advocacy work. Since that time, many have joined the cause and The Friends of Richard Lapointe was born. Perske is a legendary giant in the field of false confessions of people with intellectual disabilities. He is also a respected author, advocate and long-time supporter of The Arc. He compiled a list of people with intellectual disabilities who gave false confessions in order to document just how often false confessions are coerced out of people with intellectual disabilities, and to show how devastating the outcome can be. Those accused of crimes they did not commit often face the greatest injustice of all, some losing their lives when coerced into giving false confessions. Since 1983, over 60 people with intellectual disabilities have been executed based on false confessions. Lapointe, who became one of Perske’s closest friends throughout this ordeal, was on Perske’s list – until last Friday.
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Divorce, Financial Security and the Son or Daughter with I/DD

By Craig C. Reaves, CELA, Special Needs Alliance

SNA LOGO trademarkedThe family disruption that often accompanies divorce is compounded when a son or daughter with disabilities is involved. Divorce attorneys are often unfamiliar with the nuances of how public benefits interact with child support, alimony, and custody. Laws differ dramatically by state and are in flux in some states, as legislators and the courts deal with a growing need to address the special circumstances that arise when the divorce involves a son or daughter with disabilities.

Extra Expense

Child support charts simply don’t account for the extra financial requirements of many children with disabilities. The costs of healthcare, therapies, equipment, special diets, support services, transportation and more are often difficult to accurately calculate. To complicate matters, parents sometimes disagree about a child’s abilities and disabilities, which can have a significant effect on divorce negotiations. Also, alimony calculations rarely take into account any drop in the custodial parent’s income due to caregiving demands, as well as the cost of needed respite time.

In addition, since children with intellectual and developmental disabilities may require lifelong financial support, their needs throughout adulthood should be evaluated. While relatively few states have laws on the books requiring a parent to support an adult son or daughter, many courts that have considered the question hold parents responsible for supporting adult offspring whose disabilities make ongoing financial support necessary. It is not the disability that is the determining factor, but the son’s or daughter’s ongoing need for financial support that results from the disability. Also, unless the state law clearly imposes a duty to support an adult offspring, many courts will not order support payments unless the court is asked to do so prior to the child becoming emancipated. On the other hand, some states explicitly end parental responsibility at a set age, such as 18, 19 or 21, whether or not the child has a disability.

Whatever the situation in your state, the issue of continuing support into adulthood of a son or daughter who has a disability should be addressed at the time of divorce, since making changes later can be difficult. Even in states with no-responsibility statutes, courts will uphold support commitments contained in the divorce decree.

That said, the son’s or daughter’s lifestyle during adulthood may need to be considered. What sort of education will be pursued after high school? What type of job is he or she interested in? What skills should he or she be developing? Where will he or she live? What will his or her support needs be? And so on.

How Public Benefits Are Affected by Child Support and What Can Be Done about It

While the family’s income may have previously been too high for a minor child with disabilities to receive SSI (Supplemental Security Income) or Medicaid, that could change if the custodial parent is unable to work outside the home due to full-time caregiving responsibilities. Any SSI received by a child with a disability will not be taken into account when courts establish child support obligations. On the other hand, many courts will factor in the child’s Social Security benefits if they are being paid because of the non-custodial parent’s work record.

While a child is a minor, child support payments are made to the custodial parent. This may result in family income that is too high for the child to qualify for needs-based public assistance. However, once the son or daughter reaches the age of majority, 18 in most states, any child support payments are deemed to be the child’s income, even if still paid to the custodial parent. At the very least, this will reduce, if not eliminate, the child’s potential SSI income and may create issues regarding Medicaid eligibility.

This can be avoided if the support is paid into a self-settled special needs trust (SNT) that is established for the son’s or daughter’s benefit. By doing so, the payments will be income to the trust instead of the offspring’s and will not reduce their SSI. While this type of SNT can be established by the parent or grandparent, in order for the support payment to avoid being treated as the son’s or daughter’s income, there must be an order from a court requiring that the support payments be made into the self-settled SNT.

If paying support payments to a self-settled SNT would best serve the child when he or she becomes an adult, the trust can be established at the time of divorce. The court should then order that support payments be paid into the SNT once the son or daughter reaches the age of majority. The court order can be made either at the time the original divorce decree is entered or later, but it is best that it be made before the child becomes emancipated.

Be aware that using an SNT to pay for certain expenses—such as food or shelter—will reduce SSI benefits. Even if the non-custodial parent pays directly for such items, including utilities, SSI will be negatively affected.

Clearly, the financial implications of public benefits for divorce and child support are complex and outside the experience of many divorce attorneys. For the best results, consulting an attorney who understands special needs planning is important to ensuring that all relevant factors are considered.

The Special Needs Alliance (SNA) is a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

More Veggies and Fruits Please!

fruitObesity has been a large problem in our country for several years now, and affects both people with and without intellectual disabilities (ID). Through The Arc’s HealthMeet project, which has conducted health assessments on over 1,000 individuals with ID in its first two years, 35% were in the obese category and 11% were in the extremely obese category.

According to ChooseMyPlate.Gov, half of your meals should be fruits and vegetables. While this sounds easy, many people do not meet these goals in their daily eating habits. Fruits and vegetables provide a lot of vitamins and nutrients—vitamin A, C, potassium, and iron to name a few—that our bodies need daily. They are also naturally low in fat and will help to fill you up without all the additional calories, so feel free to eat as much of them as you’d like! Just be careful about extra toppings that you may add on. For example, make sure not to add an excessive amount of butter or cheese to things like broccoli or brussel sprouts, and use salt sparingly.

Below are a few easy ways to help increase your fruit and vegetable consumption throughout the day.

  1. Smoothies: make them in the morning for breakfast or as an after-dinner treat. You can use a variety of fruit and even add in some vegetables as well. Add a little kale or another green leafy vegetable in a smoothie to help increase nutrients even more.
  2. Fruit/Veggie Appetizers: most people come to the dinner table ready to eat. Have some cut up carrots, peppers and hummus out for individuals to snack on when waiting for dinner. Having some time to snack on the appetize will allow that food to digest in their bodies before dinner and will help to fill them up on healthier options so that they will be less likely to go back for seconds once they have finished their plate. When individuals eat too fast their bodies don’t have time to realize that they are full. Spreading the meal out with a healthy appetize of vegetables in the beginning allows for more time for the body to recognize it’s getting full and send these signals to the brain.
  3. Disguise them!: Add slices of fruits and vegetables to items you wouldn’t usually add them in or just haven’t before. Finely chop zucchini, squash, or eggplant and add to spaghetti sauce – they won’t even notice! Salads and sandwiches can be enriched with slices of apples, grapes, kale, cucumbers, carrots, peppers, and more.
  4. Drink them: Fruit juice can be a great way to get easily add in some extra fruits. However, make sure that it is “100% fruit juice” as other juice drinks can use a lot of extra sugars to sweeten and flavor them.

Making sure to offer a variety of fruit and vegetables to choose from will help determine what kind of foods individuals like. Buying fruit fresh is a great idea, but fruit that is frozen or canned will still provide a lot of needed vitamins and may be easier to store and prepare. Make sure canned/frozen fruit doesn’t use any extra sugars or syrups added to preserve it, as that can add a lot of extra calories. Try cooking vegetables in an array of different ways – raw, steamed, baked, grilled, etc. An individual might not like carrots because they are too hard to chew, but if you steam them and make them softer it could be something that they enjoy eating.

Check out The Arc’s HealthMeet webinars for more information about nutrition and eating healthy.